Alzheimer's, other dementia push more men into role of caregiver

Nov. 4, 2012

Aline and Walt Zerrenner receive communion from Jim Cotter of St. Mary of the Immaculate Conception church July 9 at their home in Greenville. Because of her Alzheimer's, Aline is no longer able to attend church. / Dan Powers/The Post-Crescent

About this report

In October 2011, The Post-Crescent began closely exploring dementia, a growing concern as members of the baby boomer generation reach age 65. The newspaper began its work by introducing readers to Walt and Aline Zerrenner of Greenville, who are facing this frightening reality. During the past year, reporter Cheryl Anderson and photographer Dan Powers have closely documented the Zerrenners’ experiences. In an occasional series, “Living with Dementia,” the newspaper has delved into causes of the disease; its effects on patients, families, caregivers and communities; and the response from the medical community and government. To see other stories, photos and videos, including a special report on the Zerrenners, visit postcrescent.com/InTheMoment.

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Dementia is a frightening disease that leaves families worried, frazzled and isolated. The Post-Crescent is here to give you the latest on research, tools for coping and a forum to talk about the disease and its effect on your lives. Join us for an ongoing conversation at facebook.com/LivingWithDementia.

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Walt Zerrenner always has been self-sufficient.

“I was single and lived by myself before I got married,” says the 71-year-old Greenville man. “I wasn’t a gourmet cook, but I was preparing my own meals and washing my own clothes and pressing my own suits even before Aline.”

After marrying Aline, 71, nearly 38 years ago, many of those duties fell to her — as did helping raise the couple’s children.

But during the past few years, taking care of the home has fallen on Walt’s shoulders. It’s become second only to taking care of Aline, who began experiencing cognitive impairment in 2007. In June 2011, doctors said Aline had full-blown Alzheimer’s disease.

While it is no big deal for Walt to do housework, caring for Aline is an ever-increasing challenge.

He’s not alone.

While women are more likely to be caregivers, the number of men caring for loved ones with Alzheimer’s disease or other forms of dementia has risen from 19 percent to 40 percent in the past 15 years, according to the Alzheimer’s Association. Among those 45 and older with the disease, about two-thirds are women (3.4 million).

This is yet one more of life’s dynamics being changed by Alzheimer’s, which some doctors call the defining disease of the baby boomer generation.

More than 10,000 boomers (born between 1946 and 1964) turn 65 every day. One out of eight eventually will develop Alzheimer’s, the association predicts. Some 10 million boomers will either die with or from the disease, the only one among the top 10 causes of death without a way to prevent, cure or slow its progression.

A year ago, Aline’s short-term memory was less than 20 minutes. Most recently, immediate memory loss has increased substantially, as has her ability to process new and current information.

Those changes also bring more stress for Walt.

“As a caregiver I find I am becoming a little more impatient, but not with Aline,” he said. “It is with other things and other people at times. I believe this is attributed to the demands of caregiving.”

Walt’s advice to other male caregivers is simple: “Understand it is the disease; it is not the person. The person’s not changing their behavior on purpose.”

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Expressing feelings

Kristine Sack, licensed older adult counselor at Thompson Community Center in Appleton, counsels people 60 and older along with their caregivers and families.

“We’ve seen an uptick in men who are struggling with caregiving responsibilities, sometimes work responsibilities, if they’re not yet retired, and daily household responsibilities,” Sack said.

“They’re struggling because even though there’s a trend now — and has been for a while — to let boys know feelings are OK, there’s still a significant portion of ... men that are from a different generation that think they should be the stoic ones and not have to have an emotional response. And if I do have an emotional response, I’m not going to talk to anyone about it because that’s not what we do.”

One of the biggest struggles for men is talking to their children, particularly a daughter who wants to know what’s going on with mom.

“Dad will provide clinical information, but it’s tough to talk about his own feelings,” Sack said. “It takes practice, and we do that in sessions. We start with identifying emotions, putting a name to what you’re actually feeling and get comfortable with actually feeling that it’s OK.”

Counseling services at Thompson are offered on a suggested donation sliding payment scale.

“I never want money to be a barrier for someone wanting to get care,” Sack said.

Changing focus

Walt has taken Aline to see neurologist Thomas Mattio at the Neuroscience Group in Neenah since fall 2010. But on Oct. 10, Mattio turned his attention to Walt.

“He said the things that I’m doing are amazing because 95 percent of the caregivers or care partners can’t cope with (a person with Alzheimer’s),” Walt said. “They’ll lash out: ‘I just told you that.’ And they get frustrated ... and many of them don’t know how to deal with it.

“The disease is calling the shots, and I have to say that to myself. Now to say that I’m not frustrated or fried or even every once in a while short-tempered, I’d be lying to you because it does, it gets to you.”

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Sometimes, Walt needs time outside to keep his fuse from blowing.

“By the time I come back in, (Aline) has forgotten we even had a conversation,” Walt said.

Mattio also gave Walt permission to be happy.

“He wanted to tell me that I need to do the things I want to do, and if that means bringing in more care or arranging for respite care for Aline, I need to do that,” Walt said.

A difficult life

Aline’s disease is rapidly progressing.

Imagine watching a movie or television program and not being able to remember what you saw less than five minutes before.

That’s Aline’s life.

“There are only a few movies she can watch, and those are ones with the simplest of plots,” Walt said. “She has difficulty following the daily schedule that I prepare as she is always unsure of the date or day of the week, even though the date is on the daily schedule.”

While Aline is not showing all the traits of stage six Alzheimer’s disease, which is marked by severe cognitive decline, Walt says her immediate short-term memory loss and the decline of her capability to process information are classic stage six symptoms.

“I would say something to her before and explain it and in the moment she would understand it,” Walt says. “She might forget it later, but in the moment she’d understand it.”

Now, Aline simply can’t understand. She also has lost her concept of elapsed time.

“If you’re here a few hours, there are times she’ll repeat herself or look totally confused or disillusioned,” Walt said.

Fleeting joy

Although Aline seems to enjoy moments, they are quickly forgotten.

Attending grandson Mike’s soccer games this summer became difficult. “One time we were sitting in the bleachers and she kept asking me what Mike’s number was,” Walt said. “And people kept turning around and looking at us.”

To alleviate the problem, Walt brought chairs so the two could sit out of earshot of the crowd.

Aline’s also become “clingier,” Walt said, and doesn’t want to be alone.

“She will follow me from room to room and continually check on me when I am outside doing yard work,” he said. “The interruptions are continuous. She cannot comprehend elapsed time, and she frequently asks me when I am going to take a break or stop working.”

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Aline is well intentioned and wants to do things around the house but often loses focus. Her balance is worsening and it’s difficult for her to go down steps. Her daily walks have been reduced to walking around the yard.

Aline also tires quickly and takes several naps a day. Most days, she’ll stay in her pajamas until about 10 a.m., have coffee and breakfast, watch TV and then get dressed.

Hearing sensitivity also is an issue, and Aline constantly complains of being cold, even though the house temperature is set at 72 degrees.

In the absurdity that is Alzheimer’s disease, Aline still enjoys Sudoku puzzles, which Walt enlarges for her. He does the same puzzle so he can help her if she gets stumped. And, Aline still plays bridge; the mechanics are embedded in her long-term memory.

In early September, the Zerrenners met with the administrator of Valley VNA Senior Living Services, which Walt selected as his first choice when Aline needs to move to an assisted-living facility. But Walt decided to keep his wife at home and use in-home care until there is no other option.

Both Home Instead and Valley VNA help care for Aline and get her out of the house for various activities. It gives Walt some time alone.

“It has become an increasingly stressful and challenging situation,” he said.